Anxious, Stressed??

Inhale, exhale . . . No we are not talking about me, right? OMGish [is that even a word?] but as I see how grown up my daughter has become, it kind of scares me, but it is also a relief. I'm not sure how to explain. I hope that I am a good parent to her and that she has learned good values and will one day be a mother herself...very much later in life [of course!]. I feel the need to talk to a friend, but I can't seem to get a hold of anyone. To really express how I am here I am sitting, blogging away, hoping that I will feel better after I say a couple of ramblings and log off, right? Goodness, I just hope and pray!

My neck, back . . . let's just say everything has been hurting. I should be resting, but I am not. I should not be outside, but I am. All these things that I know I should not be doing, I am doing. So of course . . . there are consequences. But why am I doing them, especially since I know that it will be bad for me? Is this punishment or slow torture? Could be a little of both.

I can't relax to save myself, no matter how much I laugh it off or whatever, but I want to...I just want to let my worries go . . . and sleep in slumber.

My husband knows that I have been very stressed. He put out all of my medications already for tomorrow morning because he is planning on riding his motorcycle so I won't have a hard time getting all that stuff together.

Okay I am psycho. I keep asking my daughter numerous questions. Am I just being a giddy girlfriend? But we all know that I can't handle it if she had to tell me something I didn't want to hear.

I need to get away, FAR away!!

Note to Self: Don't have Children; especially girls!

When did things change? Okay, my daughter is 13, she has an "official" boyfriend. She had the guts to tell her dad, so I believe she is responsible enough to have this "official" boyfriend. Well, I got a call this evening from this boy's mother. My daughter and I went over to his house to drop off his trombone. But she said that I had invited her son to my house tomorrow. I said...well I thought the kids were just going to the pool. She had mentioned how this was all new to her...and I was thinking to myself this is VERY new to me. I went over there and had a discussion with his mommy, while our two children sat in between us in the kitchen. As if they were going to get married. She asked ten million questions, I thought I was the queen of questions. I was so ready to leave. Not only did they live in a huge home, but had left their garage doors open so that we can see that they have very expensive cars. My husband felt like I was trying to impress someone...I wasn't. But I guess...well I didn't want to come off as a young, immature woman either. Who was so reckless to wreck their son's life. Apparently, she asked questions about how athletic and intellectual she was. OMG, are they getting married? I don't even know if they even held hands yet? We just asked the boy to the pool.

Then, I got talked to by another father. Same day. One of her girlfriends that we have known since they were in pre-school was over. She slept over too. Actually, we had a cookout at their house yesterday. He - the father, felt that I was undermining his authority. Yes, this day could get worse.

Anyways, I got burned, my head aches...and well, there isn't much left to this body of mine, but I took a ton of drugs for tonight.

The maturity of this so-called "relationship" might kill me. I think it is very cute. I just want them to enjoy their childhood. They seem very cute together. Let's see how much more I can survive.

Last night...

I went over to my daughter's friend's house last night...OMG, can you say TIRED? It was a hot day and I went over wearing a jean skirt, tank top with a light sweater. As soon as it got dark, all of a sudden, it got very cold. But I was talking amongst the parents, drinking wine [nonetheless], so who knows? My hands got so cold, that I lost the feeling. I do have Raynaud's, but it has been a while since I have had any significant problems with it. Well it definitely acted up last night. We finally leave there house at 11, which is really late for me especially since I worked all day and didn't get any rest in between. I got home...I didn't feel very well. My daughter brought over a guest - for a sleepover. The guest is a girl that I have known since my daughter went to pre-school, they have been friends ever since. My daughter had to help me into bed, with my medications, an extra blanket, but I couldn't get my hands to warm up or my feet. It hurt so badly. I believe I had a seizure in the evening or while sleeping b/c I couldn't talk or move when I woke up. I had to nudge my husband to help me. He usually can't understand me, but he was able to today. I felt horrible. I was in a lot of pain. He gave me a keppra, but I could barely open my mouth. He also gave me a vicodin. I guess the alcoholic beverage didn't help things either. He had to work today, so he helped arrange my body so I was a little bit more comfortable. Then, he felt that we should cancel all outings today because I was such a wreck. I felt really bad. We are supposed to go to a graduation party later today. I also know my daughter is planning on going to the pool and I would like to go with, just to watch the kids. Yes, I know, she is probably so embarassed of her mother! Right now, I feel as if I could barely breathe, like a heavy rock. My heart is pacing. Now the words from my internist comes to mind, " . . . the Lupus has affected your heart and you need to see a cardiologist . . ." No, I don't want to seee another doctor. I need this break. I need to take care of myself. But one evening of not really doing much, except sipping some fruit wine with a couple of other parents, getting into a heated debate about whether or not our children should be allowed to use the internet as freely as we let them. Yes, it was a heated subject considering all of our kids are girls. There were three fathers there - and you know men, it was just hard for them to take it in. I mean...we can only teach our children so much and then hope that they make good decisions, right? They won't listen to us forever?? I feel that my daughter is responsible, but then again, their kids...well it is definitely different.


Last DAY of school!!

Yesterday was my daughter's last day of school. She has finished 7th grade and will be moving on to 8th grade. I was at school from 7:30 a.m. until almost 4. I was pooped. The kids were just nuts! I had to take my meds to even be in the same building!! I was helping out the other "mommies" do the graduation stuff, feed, clean and decorate. I tell you it was some rough work!

I finally got to meet my daughter's boyfriend. He's cute. They are both cute. I took him home, then to my house, then to the mall, then back to his house. Umm...I guess in the mix of everything, he forgot his trombone in my car. My husband is still having a hard time talking about the boyfriend. He would rather we call it her "special friend." I don't understand??

Anyhow, my sister-in-law came over last night. She dropped off her dead beat ex boyfriend at the bus stop because he is supposed to go to Kansas City. I don't know why, but she let's him live with her, feed him, etc. She pays for everything because the bum doesn't have a job, no car, etc. He is a compulsive liar too. She keeps justifying why she keeps letting him stay, because she can't kick him out - he has no one else [is what she keeps saying?] well - maybe he should stay in Kansas City with his family?? for thought? But no. Then there was some thought that he might be abusing her dog. Her dog is cute, furry and very jumpy - like a cat. Hee:) I groom her all the time. But all of a sudden - she became very afraid, skiddish, etc. But my sister-in-law can't believe that he would do such a thing, but I can. He lies about everything. Why not this? But the dog was fine when she was at our house, played with our dogs, ran everywhere, wagging her tail. Who knows?


ALR - Tuesday

ALR, stands for Alliance for Lupus Research. I have started my own family team, in realization that it might be a three man team! I'm not sure though, who knows? Maybe my family will pull together and actually do something for me, for once! I wish, I can only wish. I didn't really pick a name [Ms. Indecisive], my daughter did - characteristically, sounds like her too. I have yet to get started on this "ask" letter - so we'll see. I don't know if divulging too much or too little is good or bad?? Or if I should just stick to statistics and leave out the personal part, but I think the personal part is what get's it going. Let's just say I really do have a hard time deciding on things. I guess I could try to give my writing skills a try.

My allergies are in full force, or shall I say a cold? I have no clue. I am taking this Bendaryl combination with cold medicine. Umm...I'm achy...and I just feel horrid. I don't know how else to treat it?? Any suggestions? Besides seeing another doctor? I need time off from seeing the doctor. And I have declared this time - to be my time off. I have dried up my skin and everything an effort to dry up my drainage...but that still keeps happening. I am not left with very many options now. Maybe just plain Benadryl will do the trick.



This is nothing new, depression comes with the territory of having lupus. I guess I have had it for a while now...being on a whole cabinet of medications, uppers/downers/happy pills, etc. Who knew there was a pill for almost everything? I don't want to dwell on being sad...but I have made my decision to slow down on my treatment. I have decided to cut back on dosages. I just can't handle any more BAD news right now. Everytime I go to the doctor, it's always bad news. I can tell my body is's like that feeling in the baground that you know that is happening, but you just ignore it. The odors from when I urinate. Sometimes when I lay down my abdomen hurts. I am not sure if it is my kidney, but it is probably. The urine isn't foaming, but it smells pretty bad. I haven't said anything. I have cancelled all of my appointments with the exception of my cytoxan therapy on Friday, July 13. Am I going to make it worse? Maybe. But I think I am willing to take that risk. My life has been fulled with so much and maybe it is my destiny. I have always been known to be a stong person. I even thought of myself as being strong [does this sound like pride?] maybe. But I am just a regular person, trying to live liife in a body that hates me. I want to be normal, but I am not. Am I so special that life has to be so difficult? I suppose.

The man i loved [or maybe thought I loved] - I finally told him last year that all these years I had reserved feelings for him. I never let him know all these years because I guess I was too ashamed. Back in the day, I knew he was right, he would treat me well and we were like peas in a pod. I think it scared me. I ran the opposite direction. The direction of my husband now. My life with my husband has been tumultous. We have been through a roller coaster of emotions. From having a child in my teen years, getting married & having lupus.

We started wtih nothing, my family rejected the fact that I had a child out of wedlock. But we did ended up getting married. I learned to love him. Although, I don't know how much he loved me. The first year we were together it was good. The second year...well he left me, for another woman. Left me alone with an infant child to raise. I had no idea what i was going to do. He was having an affair with his friend's girlfriend. A girl that I be-friended because I felt sorry for her and kind of obliged my husband to help her. And this is how I got paid back? I was very angry. I was abadoned. Something that was very common in my life is abadonment. When times got hard, I got left behind.

Just like this disease...I feel like my doctors are a step behind what I need. My body is not responding to me, not responding to my medications. My body is trying to abandon me. Why? I ask myself that question all the time. I know that I will never get an answer, but it is something I always wonder about. Will life give me a chance? Will God give me relief?

I worry too much, which could be another factor in my crazy life. Some might say I worry about things that doesn't matter. Which I know [in my head] but in my is different.

I am so lonely. You might say, how can she be lonely?? She has a family, a full house, extended family, yet I am alone. No one understands what I go through, except for other Lupus sufferers. My family has no idea. I have written various letters, in depth, in length and in detail as I can be, but no one understands. Why? Why can't I just be happy with what I have? I guess because I want more. I want relief. I want not to hurt anymore. I ask for that sleep that I desperately seek from God.

an Itch, an Allergy, a COLD!

I am at work today. Where else would I be?? Anyhow, I got up pretty early, but left the house late because of my ensemble. It just took me forever and then I couldn't find the right shoes, well you was just one of those "indecisive" days.

My husband [poor thing] has been suffering from allergies [he thinks], but I think it's a cold! My daughter also has been suffering from [dunno] but has been sneezing like crazy! I am not sure if it is allergies or a cold?? How can you tell the difference? I am totally itchy today. I am about to rip my skin off. I had to wear a sweater so I couldn't touch my arms because I keep scratching. Yesterday, I took a shower and I could feel the tingling on my legs, arms & face -- itchy. Maybe I'm allergic to the soap, shampoo or lotion? Who knows. Now my sinuses are draining. Yes, lovely, huh?

I went to lunch at the grocery store to buy benadryl and realized that I should've also bought the regular bendaryl. I asked a co-worker, while she is at lunch to pick me up some. Because I don't think the benadryl - allergy and cold is cutting it. My husband called me a few minutes ago, about itching his eyes out. I just told him to go to a local grocery store and get visine and benadryl. I hope my daughter is surviving at school.

I had the hardest time figuring out a name for my lupus team that will be walking in the ALR in Denver on September 29th. I called my friends that would have catchy and creative ideas. Unfortunately I was unable to reach any of them. I was left with my daughter and -- well the name is something I wouldn't have picked, but it is kind of catchy?? I will have to get shirts made up for it too. Good thing it is still far away. I am also trying to see about sponsorship and how that will work out. I have never done this before, but they call is the "ask" letter. I want to give out information, but not too much information, you know??


lazy day...

Today is Sunday and I have yet to make it out bed. My husband gave me my medications this morning, got me some breakfast and my daughter cut up strawberries [my favorite] and that's it! My husband has stayed in bed with me, plus my lab - Maxie. He's getting old...and I know it is kind of useless and very random. But we got postcards in the mail to remind us of our other lab's birthday. Then I remembered that Max will be 7 this year, he's 49 years old [doggie years]!! They say that labs usually have a life span of 10 to 15 years, if they are in good health. OMG, I am not sure what I would do without my Max! He has been through my good and bad times. He always stayed with me after I would have my cytoxan treatments because [I think] he knew that I felt really bad. When I would cry, he would lay down next to me and let me cry on him. Sometimes I talk to him too and it is so weird, because it seems like he can understand me. Yes, I know that sounds strange. Dogs are great, they love you no matter what - that is what I called "unconditional love".

My daughter is taking a bath, she takes the other lab in the bathroom with her and let's him lay down next to the tub. He loves to eat the bubbles and tries to always find the animal scrubbie, hee:) He's so cute!! Although, there are times when I think he'll actually take the BIG plunge into the bathtub for that scrubbie!